On a good day, parenting will test the integrity of your character. On a bad day, parenting will test your will to live. Parenting children with trauma histories will cause you to test the integrity of everything and everyone you thought you knew, for the rest of your life.~J. Skrobisz

Friday, December 31, 2010

We have long since touted Sissy's birthday as "The Coolest Birthday Evah!" because she was born on the last day of the millennium, 12-31-99. For many years she believed the fireworks around the world were because the whole world was celebrating HER birthday. Too funny.

Wednesday, December 29, 2010

Therapist said with trepidation that we should still be able to keep Sissy's therapy team since there are disagreeing diagnoses and her private/on-going care pdoc and psychologist have PDD-NOS as Axis II. The Dx that the government used to qualify Sissy for disability also has PDD-NOS on Axis II. In addition, the psych ward was only crisis stabilization and not ongoing care so they may have observed behaviors that suggest an Axis I diagnosis but with only 72 hours of clincial notes, it's not enough to change the Dx across the board, it is merely a suggestion for ongoing care. And finally, the pdoc would send reports today showing PDD-NOS as Axis II. [1]

That's a mouthful, I agree. All of it means we're good to keep the same therapy plan we have for the next six months since Sissy just reauthorized for another 600 units with her IFI team. (Who are credentialed to write a PRTF)

PHEW!

Now, for acronym help (because some of you asked for definitions)
1. PDD-NOS = pervasive developmental delay not otherwise specified

there is some disagreement in the mental health community about this Dx. Some say it is just another title for ADD/ADHD. Others say it is a higher functioning form of autism, higher than Asperger's. Some say PDD-NOS and Asperger's are one and the same. With PDD-NOS as an Axis I diagnosis, it is assumed Sissy has some form of ASD

2. ASD - autism spectal disorder

3. mood disorder - NOS = again NOS means not otherwise specified which just means that it's hard to say if Sissy has bipolar with psychoses, schizophrenia or dissociative identity disorder. In general, the mental health professionals prefer to refrain from labeling mood disorders until after puberty because the mood variations are too sporadic to get a clear picture

4. RTI = response to intervention. This is a four tiered system of academic accommodations that students may need in order to perform at grade level. A tier 4 RTI student automatically gets an IEP. Sissy is at tier 3.

5. IEP = individual education plan. this is an academic plan created to specifically address a student's learning impairments that are evidential of their mental health and/or developmental delay issues

6. RAD = reactive attachment disorder. I know, you're laughing at me because DUH, of course you know that. However, did you know that this acronym also means Reactive Airway Disorder which is a chronic asthma condition? It is important to make the delineation when talking to a triage nurse at the ER or you may find yourself talking to a pulmonologist instead of the psych intake.

7. Dx = diagnosis

8. Rx = prescritption

9. Px = prognosis

10. IFI = intensive family intervention. This is a therapy team that comes to address a patient's mental health needs. (NOT developmental issues) including helping the parents/caregivers get a plan for discipline, routine and wrap-around services like occupational therapy, adaptive swim , tutoring, etc. This agency acts as a go-between in the event CPS gets involved in your child's case because ideally, the therapy team's notes are sufficient to demonstrate to CPS that your family is continuing to address your child's intense needs in an appropriate manner in addition to providing a safe environment for other family members. These therapists are considered "core providers" that can write a PRTF to demonstrate a need for placement in an RTC or other facility. The majority of their therapy approaches revolve around CBTs and DBTs

11. CAFAS score = not sure what the acronym means but I can tel you that this rating scale is the "green" light for referral to RTC. If your child's behaviors score above 120 on the CAFAS scale, then there is significant data to recommend placement. For Sissy, her CAFAS is too low because she won't show behaviors at school (or the school isn't accurately reporting which her therapists and we suspect is the case). We've also been informed by both the IFI team and the hospital that repetitive visits to the crisis stabilization unit at the psych floor drives up a CAFAS score very quickly as well as suicidal and homicidal ideations and self-harming or threatening behaviors to others with in a 30 day period. In other words, insurance looks at a CAFAS score before they even begin considering paying for an RTC placement.

12. RTC = residential treatment center. There are many different types. Sissy was at a "camp" type RTC last time. It was more for children between placements. Sissy really needs a more clinical/institutional setting.

13. PRTF = psychiatric review treatment form (or thereabouts) it is the questionnaire that a core provider completes that generates a CAFAS score. This is a standard form developed by mental health professionals and should be similar to or identical to other PRTFs in other states/jurisdictions. It is similar to a psychometric evaluation with a rating scale that is exponential. If a child scores consistently in the category 2 area, the CAFAS score is 10x fewer points than a child that scores in category 3. Category 4 patients would have CAFAS higher than 120 (the green light number for placement). Without her recent stay factored in, Sissy is straddling Category 2 & 3 on the PRTF (2 because school doesn't report what we and her therapists see)

14. CBT = cognitive behavioral therapy. In this therapy approach, the client is asked to confront their issues head-on. For example, someone with severe OCD might expect to sit with dirty hands for 20 minutes during a session while reporting their level of anxiety. The objective is to help the patient learn that if they can process the anxiety, the nuisance problem isn't really a problem anymore. For RAD kids, CBTs are used to help them address hygiene, anger and affection issues. Indeed, the intent of accurate and certified trauma/attachment therapy IS a CBT approach (holding techniques, time-in, etc.)

15. DBT = dilectical behavioral therapy (a secondary class of CBTs) In this therapy approach the client is asked to confront their issues using language. Fo instance, Sissy uses a number scale to report her level of anxiety, happiness or anger instead of actually using vocabulary words. Another example is coping skills - blowing bubbles,self-prescribed time outs, self-soothing techniques and screaming in a pillow to address anger

I hope that helps! If nothing else, you've just had an education! lol

[1] as it pertains to Sissy's PDD-NOS Dx her team is divided. The psych staff said they couldn't discern where the PDD-NOS began and the RAD ended. In other words, we can't say which is the horse and which is the cart. I say it's all RAD. I've always said that. Having a son with ASD, I can tell you straight that Sissy has NEVER had developmental issues like her brother. When she is forced to be appropriate in motor skills or other developmental concerns, she is capable. In addition, after many evaluations, Sissy does not demonstrate a need for OT. In fact, she comes above 50 percentile (OT is provided for patients that score below 35% which is where AB is at). Sissy's pdoc and her psychologist refuse to put PDD-NOS at Axis I BECAUSE she's a RAD. Even the RTC where Sissy spent 100 days last year didn't put it at Axis I. She's not really a spectral kid. She just initially presents as spectral because as the staff said, "She's a really tough case". We RAD moms know the truth. RAD mimics EVERYTHING. If RAD is on the docket, rest assured, that is the real issue.

Tuesday, December 28, 2010

We may have hit a roadblock with Sissy's therapy team. They are not considered skilled enough for ASDs. They are however, considered core providers that can prepare a PRTF. Something the psychiatrist is NOT allowed to do.

The following snafus pose a threat to our situation based on the psych ward's adjustments to Sissy's Axis I diagnoses.

#1 - with PDD-NOS as an Axis I Dx, Sissy's therapy team may no longer be able to provide services. We will find out tomorrow after they staff our case.

#2 - if Sissy's therapy team can no longer assist in our case, there is NO OTHER ENTITY locally that the state medicaid program would consider as a "core provider" that can write a PRTF to get Sissy a placement

#3 - with no therapy agency overseeing our case, we are extremely vulnerable to potential abuse charges (which Sissy is likely to do based on her recent language and ideations in her rages at home)

#4 - with no therapy agency, what the *BLEEP* do we do with her?!?!

Oh, and CBAY waiver expires in April whether Sissy is "better" or not.

*sigh*

I mean really. We can't win for trying. The pdoc said on Monday morning that his credentials are not sufficient for the department of mental health to accept his recommendations for a clinical placement. He went on to say that since our last remaining local agency that deals with psych pediatrics that IS recognized by the state department of mental health closed in November, there is currently NO agency except the therapy group Sissy is with.

So tomorrow may bring a *bleep* storm of hideous changes that set our case with Sissy miles backward.

But the therapist that came yesterday and gathered all of this data still managed to have a session with Sissy in which she said gold. Really. These words are therapy gold:

Sissy, you have many ways for doing things.
None of them are the right way

Oh, Sissy's expression was priceless.
And truly, if that doesn't sum up the cruxt of RAD ideology, nothing does.

Let's hope the other FOUR Dx on Sissy's Axis I list will keep her therapists hanging around for the next six months insurance already approved.

Sunday, December 26, 2010

Sissy was discharged Friday morning in time for the holiday. There was no possibility convincing the staff that the holiday was a trigger and would undo her recovery in a skinny minute. Their response was "v.istaril 3x/day and b.enadryl an hour after dosing that it doesn't work"

pbft

It's not meant to be a maintenance med (neither is b.enadryl), it's intended to be a last ditch choice to dull the rage and psychoses. But 60 hours post-discharge and we've learned she can not function without it. Home environments are just too much for her.

72 hours on the floor Sissy went from all-out crazy-messed-up with self-mutilating behaviors and a head-banging rage that may or may not have resulted in a minor concussion to being bright-eyed, smiley, cheerful, well-groomed, cognitively alert and regulated, even seeking appropriate affection. Yes, the staff upped some other medications but not enough to make that kind of drastic change in such short time. My conclusion about the radical change overnight? Environment.

The stark white, institutional-like structure, the uniformed staff and the rules of the floor are what she needs. All else makes her mind unravel. And I think Sissy knows it too.

While at the hospital, I redid her room. Best thing about foam walls (which the staff was delighted to hear about - so glad we were able to make that hard choice for her safety)[1] is that they can be written on. I put the 9 gifts of the Spirit [2] on the walls with correlating scriptures for all of them. I put her things in clear, labeled bins to ease clean up. I returned all lovies and blankies. I hung all non-harmful artwork (with the exception of a framed d.isney princess lithograph but I faked a rage and the picture didn't go anywhere so I think it's ok). The room looks pretty. It looks inviting. But after seeing how the stark, white, void nature of the hospital helped her, I am worried that my good-will may backfire.

There was only one other patient on the ward so with a quiet floor and not much to do, the staff devoted an extensive amount of time observing and deliberating over Sissy. At discharge the doctor overseeing her case greeted me and said with a sigh as she sat, "Well... Sissy is a VERY tough case."

It was oddly vindicating and equally alarming to hear those words. I have been saying for years that Sissy is more than I can manage alone and that she is getting worse, not better despite the hours of weekly therapy and the years of medication juggling. But I did squirm a little knowing that the only safety net I had for such a challenging, difficult child is V.istaril.

Then the doctor said Sissy would probably need a few more stays at the psych floor so they could really nail down her issues. And a few more stays means we up her Cafas score high enough to get a PRTF that proves she needs long term placement. Reading between the lines I can extrapolate the truth that the psych staff do not believe a home environment is the best place for her either but insurance is what insurance is and this is the game we must play.

For now, three things remain:
#1 - as I suspected a month ago (but initial tests disproved) Sissy is suffering from hypothyroid which is probably increasing the intensity, frequency and length of her rages (it also makes me feel better about her weight gain - it's not all her g.eodon! GOOD news)

#2 - We are to add autisic therapies at home - compressions and brushing, weighted vest and blanket, swim (which she was getting but she hated the instruction so I'm going to change it to free swim from the adaptive swim lessons), white noise, warm baths, lots and lots of sensory input that does NOT include much human contact because...

#3 - she's a very severe RAD, complicating her issues immensely. RAD/Autism? That was the question the staff could not answer. Where did the PDD-NOS end and the RAD begin or vice versa? It isn't answerable.

Finally, the discharge papers list the axis diagnoses. She has a total of 6 axis. (I'm crestfallen and overwhelmed![3]) At Axis I, she has five diagnoses. 5. 5! primary diagnoses driving her mental health concerns and only one is developmental. For mood disorder, they put NOS (not otherwise specified) which simply means, "can't put a finger on it and not in a good way"

We've made it through the holiday with only two rages. But we've got a week of no structure ahead of us that ends in her birthday/new year's holiday. We see the pdoc in the AM whom I fully anticipate to write an order for a clinic stay to further evaluate her meds since she needs V.istaril just for maintenance.

Overall, I'm relieved. Shaking in my boots and increasingly alarmed about the next six months, but relieved. We're on the road to something, somewhere in Sissy's care.

[1] the staff was also glad to hear about the mattress on the floor and plastic bins. The fact that we've removed all harmful items and wood furniture in light of her possible concussion was firmly approved. As is our regimented medication, waking and sleeping times and limited outings and structured routines. In other words, the more institutional we can make it at home, the better. And the psych staff gave us a huge thumbs up

[3] It just makes me want to jump up and down and scream at the top of my lungs, "WHY THE HELL IS SHE BEING RETURNED TO A HOME ENVIRONMENT!?!?!?!" I am NOT in any way shape or form sufficient for Sissy's ongoing care

Wednesday, December 22, 2010

Chatting it up with one of the RAD moms going to Orlando (she's not a blogger so I can't linky her) and she was telling me about locking up her knives.

Up until know, our knives have been tucked away in the back of the drawer, hard to get at, etc. Scissors are up high. After the last three weeks of escalation with Sissy, I'm beginning to rethink that placement (no guns or archery gear in our house, FYI)

She says she has a plastic tool bin that has a loop for a three-number combination.

SCORE!

That is brilliant. It will be purchased ASAP. That is just plain gold. And I highly recommend.

In other news, Sissy is on the psych ward on watch and crisis stabilization for her suicide threat and self-mutilation. Although she admits she did it for attention, her pdoc said, "Go immediately"

I called the pdoc because her therapists were concerned about the toenail she tore off. Said Sissy to the intake guy, "it's a bad habit I have" YA THINK!? No antibiotic necessary. The other two toenails she yanked are healing (but the new nails are growing in oddly and will need to be watched for ingrown issues) and the most recent is still inflammed and oozing but less sore.

She discharges Friday morning. Emergency pdoc appointment is Monday morning. The therapy team is recommending we ask for a clinic stay so we can strip down her meds and start again - they're thinking her current med cocktail is jacking her up. The psychiatrist on the psych ward thinks it's all RAD issues but are upping her meds and sending her home with some PRN meds (heavy-duty anti-anxiety pills) to bring her down when she starts raging so we can all have a moderately quiet if not possibly pleasant holiday.

later. After 8 hours in the ER, last night's quilting evening plans were thwarted. I have much work to do.

[edit] fosterabba posed a good quesiton: why isn't the hospital keeping Sissy longer? because she isn't showing behaviors while there (duh - it's called RADs) so they don't have a reason to medically treat her beyond a med adjustment and because it's just a crisis stabilization unit no intended for longer stays

Sunday, December 19, 2010

Sissy's latest respite jaunt was paid for by her waiver. All told, we've had 8 days in the last five weeks. It has been so relieving to have time without her insanity, time to recuperate, time to sleep, time for The Dad to get away, time to have family outings without chaos, time to be a functional family without her attempts to tear it all apart because function = death for RADishes.

I've enjoyed being reminded that I'm a capable adult and parent, even of challenged AB. I've been comforted by the fact that I can influence my children positively and that other people's children will gladly and willingly take direction from me without ado. It has been reassuring that WG and AB are perfectly content with themselves, fully trusting me and even being helpful, kind and compassionate without prompting. That has been pure bliss, I assure you. Receiving unprompted back rubs and physical affection from emotionally healthy children is amazing!

It's been discouraging to know that while Sissy has been away, we've not missed her. Not one iota. I'm disheartened to learn that I'm disassociated from my own daughter and filled with angst and ennui when I count down the hours of her return. I thought it was my own personal struggle but today I was saddened by AB's anxiety as he verbally counted down the time, announcing how much time was left until Sissy's return every five minutes. He started at 6 hours left.

It was a long afternoon.

In the last nonconsecutive eight days of respite, I've been fortified and resolved. The truth I've come to accept, however lamentable and perhaps even despicable it may be, is that I am not a mother to Sissy. I am her care giver. I know all my diehard RADs-can-be-healed readers are silently grimacing at these words but for me, it is more emotionally damaging to pretend that after 10 years of parenting I might still have the hope of teaching Sissy to attach. It is safer for all if I assume the role that is least triggering and in this case, it is simply, care giver. The stark reality is that Sissy's regard for me is the same as the regard she has for her respite provider, we are faceless, emotionless drones that exist to serve her needs, wants and desires.

The only difference is I get the maelstrom of RADsing behaviors when she returns which begs the question? Is respite worth it?

Ten minutes ago as Sissy pestered, whined, yammered and complained about a toe nail that just had to be clipped, I observed her actions without emotion. She angrily picked and picked and picked at her toe, insisting it was a huge problem for her. Cool and calm, I asked her to please show the offending toe to me and I discovered that on the same foot, she had a flaming red, infected toe in addition to the one she was fussing over.

"Sissy. What has happened to your toe?"

She explained that she pulled the entire toe nail off while at respite. Pulled it off at bedtime. It was bloody, she got care from her respite provider, she rejected that care by removing the bandage, etc. RADsing while with the respite providerI thought. yanked it off at bedtime. classic. wanted to be up. Anxious, seeking attention. self-mutilating behavior. mental note - tell the pdoc, etc. Such were my thoughts. No "OMG! MY POOR BABY! LOOK WHAT YOU'VE DONE!!" Just, "Sissy, please sit next to me and put your foot on my lap so I can determine if you need a doctor."

It's bad. Let me tell you. She will likely need an antibiotic if not a cauterization. This isn't the first time she's done this to her toes or fingers. I'll try soaking it in Epsom salt tomorrow but yeah, she's done it good this time. "Sissy, repeat after me." I had her repeat the following:

I'm going to be 11 next week.
I'm old enough to know that I should leave my toe nails alone.
I'm old enough to know I should not hurt myself this way.
I'm old enough to know that hurting myself means I will have to see a doctor.

She repeated and then sobbed about the doctor part.

"nope. you're not going to do that crying jag. I'm not feeling sorry for you. This was your choice. So stop."

She stopped immediately, proof that the crying was another attention seeking ploy. Then she whined, "I can't stop! I have to do it, I have to pull off my toe nails when they bother me!"

"Wrong. you can stop. It's a choice. Go to bed. We'll see what it looks like tomorrow. Then I'll decide what to do next. But it will probably need a doctor's attention."

While we talked I'd patched her up, both toes (because the second toe was well on it's way to infection as well). She hopped off the sofa and began her chitter-chatter nonsense talk about whatever happy-go-lucky topic she could come up with to deflect and keep my attention.

"no. bedtime. quiet."

chatter chatter chatter

"Sissy. Bed. no more talk."

"yes ma'am" and off she went. Followed by more chatter and snorting of her imaginary stuffed up nose.

"Stop. be quiet. Close the door."

*snort snort snort* of the nose which I ignored. I thought to bring her a tissue box and then nearly slapped my hand at the thought. don't buy into her crap, mom. let her snort all night if she wants to. don't give her the negative attention she's seeking because bringing her a tissue box would have been a death trap. She would have fussed and raged about the tissue box and how she doesn't know how to blow her nose and doesn't need to anyway and on and on and on...

But what did I REALLY want to do when my child came home? Hug the stuffing out of her. Tell her how much she was missed and how glad we were to have her home. Shower her with kisses and affection, offer to brush her hair, pet her and snuggle with her. But I couldn't do that. It would have caused a rage. Instead, I made her bed and brought her a snuggie while she watched a christmas movie with her siblings.

How I longed to cuddle her! But I'll look for that opportunity later this week when the RADsing nonsense from a weekend in respite has abated.

And what became of AB and his anxiety about Sissy's return? He hugged her tightly around her head (a classic AB hug - he won't cue for appropriate hugging - welcome to ASDs), he stimmed a lot until I was batty and then he put himself to bed without saying goodnight. He required lots of hugs and rubbing and soothing talk today. He is torn. He misses his sister but he is so relieved to have her gone. It breaks my heart to see him struggle so much. It's hard to help him understand because of his own limitations. I try to teach him what I teach WG but often it is miles over his head. So I give him love, patience and understanding in spades. Today while we snuggled in my bed, I realized that most mothers don't snuggle with their nearly 10 year old sons and that our demonstrative affection for one another might seem odd and maybe even inappropriate. But truly, AB will probably seek such affection at the age of 30. At some point I'll have to draw a line about our snuggling because it really will be inappropriate but right now, I don't see the need.

WG and I had a talk earlier in the day about Sissy's return so she was prepared. I think WG has gained a lot from Sissy's absence. She's coming to the same realization that I am which is Sissy will never be whole, never be functional, never be what we hope and dream she'll be. And we can go on being kind, compassionate and forgiving despite it. WG and I made three rules today.
#1 - when Sissy comes home, we can still have a good attitude like we've had while she's away
#2 - If Sissy rages, we'll ignore it and not get aggravated too
#3 - we will try hard to be kind to Sissy even when she's mean and nasty to us

I went on to tell WG that since Sissy has such a hard time remembering how to behave that WG can help me teach her what is right too. WG liked that idea. "Yeah. I can just say, 'Sissy, remember. Say please and be polite, ok?'"

"Exactly! I need your help teaching Sissy. It's a hard job and as her family, we all need to work together to help her."

How refreshing to have an NT child! Really, it is such a relief to have a child that thinks, behaves and speaks like regular kids do. I hope that one day very soon, WG will rise above this and soar to the amazing heights she's capable of. I hope she grasps hold of the truth that she can have challenged older siblings and still be smart, vivacious, talented and accomplished. I hope continued respite helps her gain that ground in giant strides.

To respite or not to respite - that is the question. I need it. AB, WG and The Dad need it. But the price we pay afterward may not be worth it. It's a tough call. Tuesday we have a meeting with her waiver team to review the money left and how much we still have to spend on respite.

Right now, I'm not really sure what choice is best. But one thing's for sure, I'll be making the choice that is best for the four of us and not what is best for Sissy. That ship has sailed. Survival in this family no longer rests solely on what is in her best interests. If she'll self-mutilate with her respite provider, she'll do the same anywhere with anyone. But it's nice knowing that for a few days a month, the rest of us won't have to deal with it.

Saturday, December 18, 2010

Eight years ago I had "girlie parts" surgery in a last ditch attempt to correct my organs and make conception possible and at the very least, minimize the pain and discomfort of years of monthly issues. As I came out of the anesthesia in recovery, the nurse asked me if I would like some ginger ale. I replied with a slurred voice, still in a foggy stupor of drugs, "Yes, please and thank you."

The nurse paused and then asked, "Would you like it with some ice?"

"Ooo..." I cooed, "That would be nice!"

When the nurse brought me my drink, holding the straw so I could sip, she said, "You must be a very nice person."

I nodded my head. "Some people tell me that."

"No. I mean it," she persisted. "When people are on drugs and coming out of surgery, you learn the true character of that person. In all my years as a nurse, never once has a patient said 'please and thank you' like you did. It says a lot about you. If you are that nice after surgery, you must be an angel when you're fully alert."

I just smiled back at her and sipped some more. I thanked her and drifted in and out of sleep.

That conversation with the recovery room nurse has stuck with me. The fact that the essence and true character of an individual can be made evident when they are most vulnerable is intriguing. Sure, it's astounding to learn that my true character is what I hope it might be, as though I've really seen myself in a mirror, not just my reflection but who I am to the world. But I think it's more telling to learn that the more likely reality is that people are not as they seem.

Long before parenting challenged children, I had many opportunities to be connected with the lives of other challenged individuals. I was intrigued by the potential for such alarming alterations of the mind and body and that the human spirit always prevailed over every adversity. I was equally intrigued by the ability or inability of other individuals to support the less fortunate and in my ignorance concluded that the choice to be benevolent was based upon moral character and integrity. Ignorance is such bliss.

In my senior year of college, I came face to face with the truth of the crippling nature of mental illness as it pertains to the benevolence of others. An individual that was highly regarded by my college campus ministry and who was generally accepted as very gifted, kind and compassionate was a pathological liar that had evaded police, engaged in credit fraud, identity theft and was in fact, not even an enrolled student. Layer upon layer of lies was peeled away and with each layer removed, those of us that knew her were stunned anew. The depth of her manipulations was far reaching and injured many, many people. Just typing this, I have a pit in my stomach remembering how hurtful and damaging her machinations were. It brings tears to my eyes and makes me weep both for those she hurt and in pity for her soul. This experience was the first true encounter I had with the threat mental illness plays on the moral fiber and character of a person and by default, those whose lives they touched. Once you know the character and face of a pathological liar, you never forget it. Any other person you meet that is deceptive stands out like '67 VW van in a sea of BMWs. And it's extremely painful to watch others be duped by their deceptions time and time again despite my warnings.

Fast forward to present day, living with a pathological liar that is so convincing in her manipulations that she has completely snowed the staff at her school, I am again reminded of the limitless depths of psychoses and the havoc it wreaks on the innocent and benevolent. Sissy doesn't do it on purpose. She just does it. And I continue to be the punching bag when the ignorant individuals duped by her machinations refuse to accept that it is my CHILD who is mentally ill, the mental illness and the psychoses of the mind knows no bounds and is not a respecter of age.

Sissy apparently told my therapist in a private session how much she LOVES math. My therapist and I had a good chuckle about it because it's not true in the farthest stretch of the imagination. Yet Sissy, compelled to make herself look good, concocted the lie and convincingly so, I might add. Oh, she can lie without flinching, adding just the right flair of truth that it is easily accepted as such.

Directly after my session with my therapist, I bumped into a school professional that I presumed was very familiar with the true character of Sissy. Still tickled by her latest lie, I said, "you'll never believe this. Sissy told my therapist that she LOVES math!" *giggle, giggle, snort*

O.o "No," I continued to giggle, "Sissy doesn't like math, she HATES it! it's a ruse, she would rather be in the hospital than do math. She was lying."

"oh, you never can tell what will come out of these kids' mouths. At least some of that must be truth."

*brick wall, deep sigh, realization that once again, I'm being assumed to be the idiot* I answered dumbly, "yeah," halfheartedly chuckling, "you never can tell what Sissy will say."

It infuriates me because I know the true character of Sissy. I've talked to her, metaphorically speaking, when she's in post-op recovery, still in a drug stupor. The true character of my child is to manipulate at all cost in an odd and convoluted attempt of self-preservation. It's called RADs. It has stolen my child's mind forever. Her psychoses continues to bring me pain and sorrow daily. And what of my true character?

Though I be stung, pricked, abused and blamed, I will always be a very nice person with integrity and the moral fiber of Christ whom I profess as my Savior. It would just be very nice if once in awhile, other people might get a true glimpse of the depth and the many layers of manipulations Sissy feels she must continue.

I asked her two nights ago as an off-handed thought, "Hey Sissy, what's your favorite subject. And don't say math."

"What? Why would I say math? I hate math."

"I know you do. I was just wondering why you would say you love it."

"When did I say I love math?"

"To my therapist in a private session."

"Huh? I don't even remember that. Why would I say that? That doesn't even make sense."

"I know. That's why I brought it up."

"I think I like science the best. Yeah. I like science. That's my favorite."

I laughed. "Yes. Yes it is."

Oh the mind games I have to play to get the truth from her. It's exhausting. But I believe always maintaining personal integrity despite the unending barrage of interrogations, disbelief and second-guessing I endure because Sissy is a pathological liar is more exhausting. Maybe one day I'll go psycho back on these people.

Nah. They'll just say, "see, I knew it all along. It really IS the mom that's whack, not Sissy."

Wednesday, December 15, 2010

Just picked up AB from school, not 30 minutes after the first morning bell. I had no idea he wasn't feeling well, he gave me no indication, no verbal warning, no fever, no green coloring, nothing. And yet he had diarrhea and vomiting. Poor baby!

Sissy on the other hand, complained about a sour tummy two minutes after inhaling her cereal. Literally siphoned it down like she was starving and then "mom, I don't feel good." And of course, the RAD mommy radar goes off. right. you have a math test today. you just inhaled your food. you're fine kid So I gave her some tums and sent her off.

Now I'm wondering, did I make the right choice?

And this is the insanity that goes through my mind every day. 90% of Sissy's physical complaints are invalid, RADsing behaviors. If I err only 10% of the time because I always assume it's a manipulation than I'm still getting an A as a parent, right? *nod your head so I don't feel like such a schmuck, please*

The thing is, with Sissy, I can't ever tell. I remember once she had a fever of 103 before I believed that she wasn't well because I'd been snowed so many, many times before. (ugh - don't even get me started on the time I actually took her to THE DOCTOR and she was FINE. FINE!!!! AUGH!!! still makes me mad that she could be THAT convincing in her ruse.) But when she complains about her tummy being sour and her brother comes home with a stomach flu, I second guess my cynicism ... but only for 2 seconds.

The natural consequence for lying and manipulating so many times to your parents about being ill is you get to go to school being ill once in awhile. And maybe even embarrassed by yakking in front of your peers. After all, I sent AB off having no clue he was sick and he's not angry at me for my faux pas. Why then does it make me all bothered that I may have done the same for Sissy? Because she actually said she wasn't well and I didn't believe her. And why should I when just last Tuesday she screamed she would kill herself just because she knew such a comment would get her dad and me out of bed?

You see? It's RADs because she lies so much I can't believe her when she really is sick (or suicidal for that matter!) It takes vomiting in the school halls for me to be convinced. If we took data on our RAD kids, we'd probably find that there is a greater incidence of school hallway vomiting amongst RAD kids than nonRADishes and the statistical data could be written to indicate that this phenomenon is a RAD thing. It really isn't a RADs issue, except it is because RAD moms frequently send sick kids to school because we have to call their bluff all the time.

Here's another example of something that isn't clinically a RADs issue, except it is.

Filth.

OMG. Sissy is so disgustingly filthy! Pigpen from Peanuts has nothing on this child. She would live in squalor and think nothing of it, wouldn't even recognize that she was a stinking, disgusting mess. Would probably deny it and blame someone else for the roaches, lice, odor and piles of garbage. Has indeed done such a thing before. (In fact, off point, yesterday morning she blamed a rogue deodorant thief for snatching it. Said to her, "Sissy, who steals deodorant?!? You haven't even looked for it!!!" It was in her hygiene bin exactly where it should have been. She just didn't want to stick her hand in the bin to grasp it. *shaking head*)

I digress.

Last year she got a brand new, beautiful jacket from her grandmother for Christmas. It looked so pretty on her, it was puffy, it was soft, it screamed "SISSY!" By March it had to be thrown away because it was THAT disgusting. Scrubbing it, washing it multiple times, presoaking it in half a bottle of stain remover ... nothing worked. It was ruined. RUINED!!! HOW does someone ruin a brand new coat that quickly with so much filth, grime and stench? I just don't understand it. It boggles my mind.

This morning, 23'F outside, Sissy was putting on her new coat that I gave her two weeks ago. Unzipped she was headed for the front door. "Sissy. Stop. Zip." *grunting, whining, etc.* As she stood there I got a good look at that coat and was appalled. It is disgusting already. I was so taken aback I couldn't even speak. How. HOW!?! What the heck does she do? HOW does she do it? WHEN does she make it so filthy?!?! I just don't understand. I've had my jacket for more than a year and it still looks brand new. AB's new coat looks new. WG's used coat is in better repair. I don't get it. I just don't get it!!!

Being disgustingly dirty without care isn't really a RADs thing, except it is. I can't count how many times I've picked Sissy up from school and she's had food all over her face, chin, in her hair, all down her shirt, on her sleeves - ruined shirts that had to be thrown in the trash rather than attempting to wash them. I wonder sometimes if people look at my daughter and think she is mentally retarded by her appearance and then I say to myself, mentally retarded children are better cared for than this!!! Even THEY don't look this disgusting!!! Told Sissy last night, "My dear, tonight you must make sure you wash ALL parts of your body with SOAP. Do you know why I'm saying this?"

"I stink"

OK. If the kid KNOWS she stinks, what is going on here?!? God in heaven help me, she hasn't even started her period yet. Lord, that is going to be hellish.

These aren't technically RADs things, except they are. What are your nonRAD behaviors that are dead ringers for RAD behaviors? Tell me your RAD kid is a stinking, filthy mess too so I don't feel so bad. Tell me all of your my-kid-was-in-the-ER-with-a-double-ear-infection-and-strept-before-I-believed-him stories too. Tell me something because today it's all making me a little lulu in the brain.

Tuesday, December 14, 2010

I've tried to help kids not be so angry at the world, due to their early childhood trauma, only to discover that some of them greatly enjoyed their anger and the apparent emotional blackmail it held over our family.

Which resonates with me because I'm beginning to feel like this may be the case for Sissy.

Last night, while her therapist was here, she raged about a discipline for sleeping in school. According to her, since her teacher made her stand up in class to prevent further sleeping, she'd already received a discipline and that she should not be given further consequence. Our point was that she should not be attending an extra curricular activity if she is so sleepy that she can't make it through a school day.

So she raged. We literally had to peel her off the chair and shuttle her to her safe room. The therapist got to witness the whole ordeal (FINALLY!!! After 9 months, Sissy had an honest moment in front of a therapist!!!!) and asked The Dad later, "so, is that how it usually goes?"

The Dad's reply, "Nah, that was an easy rage. About a four or a five on a scale of ten."

Perhaps the therapist will be able to help us navigate this anger better, having witnessed it start to finish (complete with Sissy tearing it up in her safe room, throwing crap around and screaming while the rest of us went about our business as usual). But I fear that what Big Mama Hollers may be the ultimate result for Sissy regardless of the therapeutic interventions - she just might have a yen to be angry and use it as leverage, indefinitely.

My other fear is that I'll never get tougher skin. I'm exhausted with the never ending inquisition into what I'm doing, not doing, should be doing, need to be doing, must change, ought to look into, blah, blah, blah. It is grueling to be under the gun every second with every "professional" that is involved in Sissy's life. Most recently, I was asked if I'm the one that gets anxious in the morning, not Sissy, that it might be ME that is driving her angst. Oh, and this one: how old my house is and if I've had it checked out to make sure that there are no environmental contributors to Sissy's mental health issues, in particular, if there might be something in the home that causes her to rage.

Oye. Answer: Sissy causes Sissy to rage and panic. Period.

For years, YEARS, I've had to answer to what I'm doing that might be triggering Sissy. Answer: I'm the trigger. Me. Mom. Because I exist, Sissy is triggered. It's called RADs people. Take me out of the equation and Sissy will stop her nonsense (organic issues notwithstanding - Sissy would be very much like AB with her disabilities if it weren't for the trauma and ensuing RADs.)

I'm tired of it.

Tired of all the therapists in the home. Five days a week we have therapy, homework, supper, bath, bed with rages and inquisitions thrown in.

I'm tired of all the negative behaviors. Five days a week I get a negative report from school about one or more of the children's behaviors (I'm beginning to understand why so many of you make the sacrifice to home school)

I'm tired of the crisis, trauma and unpredictability of mental health illness. Seven days a week I can't predict what will happen from one minute to the next so that I have become amazing about changing plans to accommodate everyone in 10 seconds flat - man can I dial a cell phone and email simultaneously!

I'm tired of all the meetings for Sissy that accomplish nothing. At least one full day a week I play the role of Sissy's case manager because as if all of these "professionals" can communicate with everyone on Sissy's case simultaneously like I can.

I'm tired of it. I don't have fun anymore. This kind of life ISN'T fun. Who can endure such judgment and scrutiny, rage, crisis and unpredictability every day ad nauseum, ad infinitum, ad litem, ibid.? No one. And I'm afraid it is going to destroy me.

Everyone keeps saying, "I don't know how you do it. I could never handle it."

Guess what? I can't handle it either. But I'm too afraid to stop trying. And for what? So Sissy can just morph from angry child to angry adult despite the intense interventions acted on her behalf for her entire childhood.

I know some of you have been talking about healing etc. Well, I'm afraid that healing will never be a possibility for Sissy. I'm afraid she'll only get worse.

Sunday, December 12, 2010

Email me directly with your snail mail addy and I will put the coasters in the mail tomorrow.

All of the entries were equally crazy but I have to agree with the voters, a school cafeteria lady that doesn't get the point that a child can't buy $40 worth of ice cream is priceless. You may be out $40 but the story alone was worth it - comedic gold!

Thursday, December 9, 2010

Thank you for allowing me the delay in voting. I'm still pretty annoyed about Sissy's latest ruse and was in no place to say or do anything reasonable yesterday.

edit: ok, I had this entire post written and was previewing for errors,etc. when the cell phone rang. The principal at the school (knees knocking - what now?!?) and she says, "good news! all the teachers have voted and we are so happy to have nominated Sissy to be Santa's Helper on Saturday at the breakfast with Santa!!!" *puke, hurl, gag, choke on my coffee* I was a good girl. I responded correctly. "I'm sorry. Sissy will not be able to do that. She is on respite every weekend with a foster family."

"Oh, we know. Sissy told us that already. So I'm going to have her be my helper on Monday next week. She'll get to stuff all the envelopes with the pictures of the children with Santa."

good. i hope she sees the picture of WG and gets jealous "How nice." *roll eyes* great. So she will be thinking "hooray, I still get it even though I'm a little bugger!!!" and I'll get the hell storm of RAD behaviors for it. Effin' brilliant

"We're all so proud of her and we were so glad to give her this opportunity! See? A GOOD phone call for a change."

"Thank you" *click. hurl. scream. gnash teeth. shout out loud to my empty house, "yeah, did she tell you she faked wanting to kill herself just to get us all the *bleep* up?!?! If you knew that would you still have nominated the *bleep bleep bleep bleep?!?!?!?*

Grand effin'tastic.
*end rant*

First, photo proof of my son's ASD. This is an example of the strange and unusual obsessions for someone with ASD. I shall call this one:

The Reeses Puffs must be eaten in a circle, by God!

really, don't try to convince him otherwise. It'll be an exercise in futility.

And photo proof that although Sissy will be chronologically 11 on the 31st of this month, most of the time she's not more emotionally developed than a two year old. I shall call this one:

I am an adorable pink nightmare! You can love me but it'll kill you

ENTRIES!

"My RAD does CRAZY Things!"

From my awesome cousin when she read through some of your stories: Wow. Dang. RAD parents should be given special awards and the prettiest wings in heaven. I don't know how I would deal with any of this stuff. At least sharing stories with one another is a form of confirmation that you, the parent, are NOT the crazy one!!!! =) Praying for ALL the RAD parents out there!

I've done my best to gather all the stories. If yours is not here, let me know right away! The entries are numbered and the entrant/blogger has been removed in the hopes that it will remove bias.

To vote, simply comment with the number of the story you think is the craziest. No vote stacking! This isn't American.Idol where you can call in for your favorite singer 6000 times in one night. LOL

1. C~ is like Sissy. She has strange ideas about her clothing: how it should be worn, what "matches", what is inappropriate regarding the weather, etc. I know, all of that sounds like normal kid stuff. Except you know our RADlings, it's never "normal."

C~ got dressed for a swimming outing we all attended and emerged from her bedroom with her suit on ... inside out, the boob cups showing! Best part? She pretended she had NO idea it was wrong.

C~ is 19.

2. Last week our RAD kid was caught stealing ketchup from the school cafeteria, stirring it in her strawberry yogurt, and then eating the crazy mixture. The teacher who got to watch her was totally grossed out!

3. Hope brought home a new nail polish, purple, unopened. GB was melting down about math. While I dealt with GB, Hope was on the floor, 5ft away, looking through her book bag. When she turned around, one of her eyelids was painted purple. The first words out of her mouth? " My teacher said I couldn't go to school tomorrow unless I used her paint. " It is everyday!

4. One day I told our RAD to put his dishes in the sink and instead he chose to stand IN front of the sink holding his sticky plate screaming that he didn't know where it went. I chose to be an awesome parent and put those nice sticky dishes in a plastic bag and let him go to church holding the bag.

5. I was visiting a RAD: Not sure what she was thinking, but apparently didn't want to get "caught" having her period at my house. So instead of throwing her used napkins in the trashcan she placed them in ziploc baggies and then threw them behind various pieces of furniture. The moving men uncovered these gems a few months later.

6. One Saturday night, we put the girls to bed and went downstairs for a late dinner. Pretty soon, we heard someone going into our bedroom. (I don't think I need to explain that the girls aren't supposed to get up after we put them to bed and that they aren't supposed to go into our bedroom without permission...) We went upstairs to check on them, and they were hiding in our closet. When my DH shooed them out, they said, "We wanted to surprise you!" and acted hurt and defiant. Thing is, we wouldn't have gone up there for another few hours!

So the girls both became a bit belligerent, maintaining that they had done nothing wrong. Eldest started into her manic phase, laughing a strange laugh when she saw me outside her bedroom and closing the door behind her. She soon morphed into crazy roof monkey.

Long ago, she had ruined the screen on the bedroom window by removing it and putting it back one too many times, so all she had to do was open the window and crawl out. She's been told not to go on the roof, of course, but such is her need to disobey that she does it anyway. She peers into the upper window, stomps around, goes to the back of the house (which is three huge stories from the ground!) and back again, making her presence very known, before being calm enough to come back inside.

It doesn't seem to matter how cold it is outside or who might happen to see her. She just is our crazy roof monkey.

7. My Russian Rad teen was caught (second hand) with another, yes, another stolen IPodTouch. When I demanded he bring it in, of course he refused, each story about it more creative than the one before. I gave him the ultimatum to either bring it in and tell us who the "friend was that loaned it to him" so we could follow up (last story and the one he's sticking to) or I was calling his counselor at school tomorrow to report that he had a touch that did not belong to him that she might want to check into. He went off about having a snitch for a parent and he couldn't believe any parent would snitch on their own kid and that he would rather die out in his tree fort in the cold than live with a snitch for a parent. This "discussion" followed him coming in very solemnly telling his dad that he had a problem. He got a can of soda from somewhere last night, drank some of it and put it in his tree fort. He went up this morning before school (most likely to catch a smoke) and drank the soda. The can felt heavy so he cut it open with a pocket knife and found a baby mouse in the bottom. He spent the whole day at school scared to death, waiting to die. This Rad mom feels a tad bit guilty taking such delight (only because I know he's ok)in this little mishap.

8. I could tell she was going to play the 'dumb game' (what we chosen to call 'crazy' behavior) so I said I am going to pick only 4 of your 10 words and when you get these correct you can go play with your siblings. We practiced saying them, talking about how to use them, explaining all the letter sounds, writing them, defining them....totally breaking down each word and truly learning the word/letters...onto the 'quiz' portion...I say 'chase' for her to spell-she says 'chaste'-I repeat 'chase'-she says 'chast'-I repeat 'chase'-she says 'I don't know what that means, that's not one of my words' I want to scream REALLY?!?! it is one of the four words we have been talking about the last hour and you have defined it, spelled it, used it in a sentence......and now you are telling me you don't know what it means/how to say it/spell it/etc

9. She found a candycane today. I said she could have it... and give a piece to her twin. She was a very happy little munchkin. Then Big sister found a candy cane an hour later and the world came to a crashing halt because said 6 year old wanted that one, too.

Sorry. This one is for Christina. You had one already.

And suddenly she told me this grand story about her how her friend GRACE has all kinds of candy canes on her Christmas tree... and implied that Grace is allowed to eat freely...

Manipulation is not new, lying is not new, but pulling a story out of thin air to further her purpose is a wow moment for this child with language issues.

By the way, she has does not know if Grace really has a CHristmas tree or not, therefore how could she know about the candy canes?

I happen to know Gracies mom strictly restricts sugar ...

10. my 17 yo darling had a friend over recently ("friend" in the sense that this girl is exactly like her and the friends mom and I got them together specifically because we knew they'd be bff's and we could get breaks from them if we alternated houses). My dd was mad at me about something (it's always something) and went upstairs to complain about me to this new friend. My younger dd came up and said, "Jessica is telling Lyn that you and her mom are exactly the same, always making up stories and exaggerting to get them into trouble". I asked Jessica (dd17) about this and she cried pitifully that she would NEVER say such a thing and to just ask Lyn if I didn't believe her. I turned, looked at Lyn, and said, "well Lyn - did she say those things?". Lyn looks at the floor and says, "Yes, and she also said she hates you and you're not really her mother". I looked at Jessica and she yells, 'Well, I never said, I didn't say those other things!!" I said, "how in the world would those other two things be any better than the first two?" and her response was, "oh, if you knew Lyn's mom better you'd know what an insult the first two things are". Huh? Talking in circles seems to be her favorite way of making me crazy. She still maintains that she DID NOT say those things about me - why in the world would she? It's so hard to remain calm during the craziness, but my dd is so predictable in her methods. She literally goes from one maddening behavior (if she gets NO reaction from me) and on to the next. If I manage to maintain control, she can rage and sob for hours and hours

11. editor note: this blogger had several stories to share. I put all her entries in one so she didn't get extra votes but after reading this I'm thinking she might need the sympathy vote!!!

How about my son got I.S.S. for calling his teacher a "fat a$$" Really? Where did he learn that colorful language? When I asked him why he said that his response was "well she has gained weight!"

(or)

Refuses to do any chores. Literally wont budge. Family is playing and having fun but my Radish has to finish his chores. He had to sweep. Not a large area but a decent sized room. Lets not go into to why he had to sweep but I am sure you know it had NOTHING to do with him dumping sand "for fun". I gave him the brrom and asked him to sweep the area like mommy would. Meaning dont push it in a corner like RAD does. He fell out on the floor and started flopping around. He forgot how to use a broom. He goes into a tirade about how the broom is laughing at him and making his life difficult. Really? Should have recorded that one. It was pretty funny to watch.

(or)

I am at work and receive a call from the cafeteria (I despise my RAD's school). The cafeteria manager says, "Umm what mother sends her sone to school with $40.00 to buy ice cream?" I replied, "A mother that did not know her very challenging child stole from her purse again. What sort of school worker sells $40.00 worth of icecream to a child that has a record 5 miles long and it not supposed to be unattended anywhere in the school?" The cafeteria worker went silent. I continued with, "look I am not trying to be mean to you but seriously I am tired of this #1 I have a difficult child which your school seems to think has a 'made up illness', #2 who taught you how to speak on the phone? #3 My kid really does have a rap sheet 5 miles long #4 Haven't we already discussed what he can and cannot have 27 times this year alone? #5 why on earth would you let any child 8 years old buy that much ice cream #6 do you have children? "

12. On Saturday morning, our son was in the basement watching cartoons, and I sent my RADish daughter down to join him when she woke up. He came up shortly to announce she came down with two purloined Starburst and offered him one, which he refused.

When I came down to confront her, she toyed with denial, but admitted she had "thrown them away" uneaten. We had the "don't steal or I can't trust you" conversation for the Nth time. (She insisted she took them because she was hungry. Yep, everyone knows how *filling* Starburst are - just a couple and I'm stuffed!)

When we were done, I asked her to tell me which garbage can she'd thrown them in (I knew she'd eat them as soon as I was out of the room if I didn't claim them), and she pointed to the spot behind the couch where the garbage can *used* to be.... until I moved it a week ago when the in-laws were coming. I said that wasn't possible because there wasn't a can there, which she insisted "was too!" I asked her to show me, so she jumped up and pointed to it, then realized it was missing. Cue the yelling, insisting it was too there, and "put it back, now!" Because (of course!) I had managed, in the time between when she had thrown them away and when I asked to see them, to sneak in front of her and hide the can without her noticing. "You moved it just to make me mad!" Which is of course what I was thinking when I relocated it a week ago to hide the icky can from the in-laws.

Sigh...after much yelling (from her) and hugging (from me), she admitted she had tucked the empty wrappers under the couch, under her bum. Which she could have told me in the first place.

Wednesday, December 8, 2010

Dear Lord, in our lives and in our home we want to honor You. If we are not thankful for the gifts of food and life; if we do not love as we ought to love; if we do not obey when we need to obey; give us the courage to say "I'm sorry." We thank you, God for the Advent gift of Confession! Amen

Our children's church (united methodist) sent these advent prayer cards home with the kids a few weeks back. It's not a tradition I ever observed growing up but I rather like it. Besides, the prayer cards make super blessings a whole lot easier! WG has even read one or two.

After much lawyer-ese from me, I finally got Sissy to confess that she did indeed scream at 5:45 am that she was going to kill herself and that she only said it to make us come (which worked - The Dad nearly flew out of the bed from a dead sleep).

And that was about all I had for the rest of the night. A ten year old that will use the excuse of suicide to force a parent out of bed at 5:45 in the morning is more than I can handle today. Therapeutic parenting skills, She Ra status and RAD approaches all notwithstanding. This confession was too much for me today, made worse when an hour later after confession she was all nonchalant and lackadaisical about it.

Shoot, even her therapist admitted tonight that she is to the point of wanting to blow her stack with Sissy because SHE'S that exasperated. This woman has two master's degrees in this crap and Sissy is about to make her come undone. So that is oddly satisfying to know but lamentable nonetheless.

yeah.

I'm done today.

I'll post the entries for voting tomorrow.
xxoo to all of you that "get it"

Tuesday, December 7, 2010

Ya'll have been making me crack up with your insane stories! I have had to put down my cup of coffee before opening my email for fear that I would snarf my mouthfuls all over the laptop. Tomorrow I will edit your stories for length and repost them for voting. Voting closes Friday midnight with winner announced Saturday morning!

It has also been fun using the stories as examples for Sissy who has been O.M.G. RADilicious the past 48 hours. Today began at 5:30 am ...

Sissy laughed at all the stories and then would stop mid laugh. "wait. I do that." So I've used them as teaching examples. She's also had some insight for some of them. One mom told how her daughter put ketchup in the strawberry yogurt. Sissy believes her daughter did this because it was funny to watch the teacher get upset and grossed out by it. Another mom explained how her daughter put purple nail polish on her eyelid. Sissy said that girl was probably trying to get her mom's attention and then was totally freaked out when she realized what she'd done - Sissy thought maybe she worried it would be permanent!

It's been fun to watch how Sissy has heard and absorbed these stories because she has done something similar to almost every single one. It's been a great teaching tool the past 24 hours so I'm going to archive a post that catalogs the stories specifically so it can be a learning post for your RADlets too.

Back to our morning ...

Sissy started it early, hollering that she needed to get up to get dressed, could she please get dressed now, is it time to get up yet, Mommy, Daddy, I have to get up (yeah, as IF she calls us "mommy, Daddy" in a sweet singing voice. NOT!!), and on and on. It was 5:30, 5:45 ish.

I said to myself, don't do it. Don't get up. Don't go in there. Don't talk to her. Resist the urge. She's baiting you, don't take the bait.

Then I started to get irritated as her hollering prolonged. how is she so daft that she can't figure out that it is dark, no one is up, there are no sounds in the house, no lights on, that it is CLEARLY not time to get up!?!?

And she continued to holler and fuss about getting up and getting dressed and on and on until The Dad started talking back to her in his sleep (they've done this before, the two of them. She'll talk, he'll answer and they're both sleeping. It's a riot, let me tell you.) My first impression was to be proud of The Dad, who, while sleeping, responded in an extremely appropriate therapeutic parent way. (I love him, he's so awesome even when he's sleeping.) And on and on Sissy hollered.

Then, we both jolted. I swear to you she said it, we both heard it, I know it's what she said but she won't admit it.

I'M GOING TO KILL MYSELF!

The Dad jumped out of bed, grabbed the key fob to turn off the alarm and ran to her room. By that time she'd changed her tune about having to PEE. "I'm going to PEE myself!" was her new tune and by golly, she was sticking to it. So The Dad marched her to the toilet and instructed her NOT to holler that she was washing her hands [1] and guess what?

Sissy hollered that she was washing her hands!

(Boy, you guys are so smart. I can't believe you guessed! lol)

And thus began our morning. By the time everyone else was up for school, Sissy was raging, swearing up and down that she NEVER said a thing about getting dressed, that I was lying, that she never shouted she was going to kill herself, blah, blah, blah.

I was trying to make a cool, calm, collected point with her about waking up disoriented and taking the time to figure out whether or not it really WAS time to wake up but she was hollering, hollering, hollering. So I said, "Sissy, I'm counting down from three. By then you'll need to stop screaming so I can talk to you. If not, you'll need to rage it out in your room."

count down.

rage louder (yeah, like you didn't see that coming! LMAO)

I said calmly, "OK. To your room. I don't talk to screaming heads." And I gently lead her by her shoulders to her room. Oh, she didn't go easily mind you. She dug in her heels. But we made it to her room and I said, "Sissy, go ahead and rage it out. I don't care if it makes you late for school."

Which was kind of the point, actually. See, here's the thing. Sissy does all of this insane morning raging crap all the time. And that makes AB rage and it makes WG irritated and then I'M hollering and then we're somehow, arms, legs, hollering and fuming, getting into the van and screeching our way to a halt at the car rider lane just in the nick of time before the first bell rings.

Yeah. I'm not doing that anymore. That's insanity. In addition, we're still working on getting that coveted IEP for Sissy so the more evidence we gather that demonstrates that school jacks her up and makes our lives a living hell being with her all jacked up, the better. Two tardies [2] in 6 school days should begin to make the point, don't you think?

So Sissy raged while AB, WG, The Dad and I laughed it up having a jolly good morning. Fortunately, the nature of our business is typically pretty flexible for unexpected morning nonsense from Sissy or the unanticipated toilet issues for AB. I took the happy AB and WG to school and returned to let Sissy simmer before I lugged her back. It helps that we got a waiver [3] from the county to be at the elementary school one mile from our house as opposed to the school we're zoned for that is 5 miles away. It's also a huge load off my back knowing we're getting assistance for AB and WG so I don't always have the but I've got to make money!!! broken record playing in my head every time the unexpected crops up.

Somewhere in the middle of all this insanity, I said to The Dad, "Here's the deal. Just because I'm She-Ra, Captain of the Universe, invincible and capable of amazing things every day for these kids, doesn't mean I HAVE to be She-Ra every time an issue pops up. Just because I CAN herd this crew off in the midst of a maelstrom, getting them to school on time come what may, doesn't mean I should."

The jury is still out as to whether or not my ingenuous thinking will result in enough medical evidence to support the need for an IEP. Our next RTI is Friday. And She-Ra will be there with bells on.

[1]we used to stand at the bathroom to survey her handwashing after toileting because she lied so badly about it and we were all so grossed out by it. Now we ask her to call out with the bathroom door open that she is washing her hands so we can listen for running water and occasionally spy on her from the hall

[2] she was late last week too - panic attack

[3] highly recommended. The school we're zoned for is unsympathetic to parents with challenged kids and extremely resistant to writing RTIs, EIPs and IEPs. We got a medical waiver for Sissy to switch to the school we live closest to because her needs are too challenging for her to be so far. It's also a smaller school that is a charter school getting extra assistance from the federal government. Bonus - the school is A.Mazing about getting kids the appropriate placements. Sissy's IEP hang up hinges on her benchmark scores which indicates to the county that she's not a floundering student academically and therefore shouldn't require and IEP. *rolls eyes* All that to say, being so close to the school is a HUGE advantage for AB and Sissy.

Saturday, December 4, 2010

Some adoptive families celebrate a Gotcha day, some celebrate Adoption Day, others just celebrate at birthdays as usual. In my heart, I celebrate the day I officially got custody of Sissy, December 4, 2000.

She had a double ear infection, impetigo, was soaked to her ears in urine, had a leather cap [1], was anemic, malnourished and underweight, had a bloody, raw bottom with a torn hymen and a flattened cranium from remaining in the same sleep and sitting position for so long. The items I received that were deemed as her possessions were thrown away for fear they might contain roaches or roach eggs.[2] She had no properly fitting clothes, she had no legitimate place to sleep. She had no safe car seat to travel in. She had nothing of value and no clear reason to keep her in the environment she was in. She had failure to thrive, was traumatized and she refused to make eye contact. Indeed, I think children in orphanages of third world countries received better care.

The first time I laid eyes on her, I was in love.

I have spent the last ten years of my life as a mother demonstrating the limitless boundaries of my love for all of my children. Here's to all the mothers, birth, adoptive and foster that know that love and motherhood may not be attributes that always go well together, but who muddle through it anyway, because no matter what happens, these souls we have charge over are worth it.

To celebrate, I have put the following on the back of my van. I wholeheartedly encourage you to do the same!

[1]leather cap - babies get cradle cap. Sissy's had gone untreated for so long that it actually looked like her scalp was made of leather. The medical term I was told really was "leather cap". It took 6 months of regular medicated shampooing and gentle scrubbing to soften the dead cells enough so they would loosen and brush out without picking.

[2] I did keep one item. At the time I thought it might be valuable to Sissy later as she processes her adoption story. It was a blanket in relatively decent shape. I washed it and have kept it safe to return to her.

Friday, December 3, 2010

The "My RAD Does Crazy Things!" contest is in full swing. Remember, deadline for entries is 12-6-10 midnight EST. Go HERE for contest rules.

I had intentions of making the next set of coasters for the contest but got busy. So here's the fabrics I'll be using. I particularly like the triangle Santas! So cute.

My IRL friend has a RAD that has done crazy things. With her permission, I'm submitting this entry for her:
C~ is like Sissy. She has strange ideas about her clothing: how it should be worn, what "matches", what is inappropriate regarding the weather, etc. I know, all of that sounds like normal kid stuff. Except you know our RADlings, it's never "normal."

C~ got dressed for a swimming outing we all attended and emerged from her bedroom with her suit on ... inside out, the boob cups showing! Best part? She pretended she had NO idea it was wrong.

C~ is 19.

OK, start telling us YOUR "My RAD does crazy things!" stories. I'll post a great one about Sissy tomorrow.

-------------------------------------------------------------------------
Here's what I was "busy" doing:

In regards to my post earlier this fall about the things we've had to give up in an effort to help Sissy including the space in our living room where a Christmas tree would be, we have tinkered, thought and brooded over ways we could still make our home festive regardless of our insanely limited home space a la Sissy's rage room. I will not go gently into that good night, [1] I will go to the ends of the earth to come up with something, ANYTHING that works.

I had mentioned it from the start but The Dad wrinkled up his nose. I persisted. He eventually relinquished when we came to the conclusion that unless we pursued strange and unusual ideas, there would be no tree in our house this year. "The thing is," I told him as he stood back and nodded his approval of my progress on our paper tree, "I knew in my head that this is what I wanted to do in the first place but you couldn't see my vision and I couldn't explain it."

Said WG, "Wow. Mom? That is THE most gorgeous tree, ever!" I even got some positive comments from Sissy which included, "Mom. I couldn't ever do that. You think of good ideas."

"Sissy, my dear, you are VERY creative. You think of great ideas all the time."

"Yeah, but you can sit there and finish it."

I was surprised by her cognitive thoughts. "You're right, I have to stay focused. I must stay on task or it won't get done."

"And you can't get distracted. I always get distracted. That's why I couldn't do it."

"Ah, but you're forgetting. All you have to do is tell yourself, 'I'm going to finish this later no matter what' whenever you have to stop to take care of other responsibilities."

"yeah."

Really. Sometimes Sissy has such amazing thoughts and conversations and it just blows me away when those things come out of her mouth. Why can't that kid stick around more often?!?

So, my paper tree serves two purposes: it covers the hideous brown wall that is the exterior wall of Sissy's room AND it gives us a tree, complete with paper presents under it! All told (thank you very much Dollar General) my paper tree with plastic ornaments cost me $16 and five hours.

We were sad to learn that we couldn't string lights on it (battery operated lights were not going to be a functional solution and there's not power on that wall) but WG said, "Hey mom! I know! We can put the lights up on the ceiling!" And she's right. This weekend we'll trim the molding in the room with white lights. It'll be so pretty! My daughters are so clever.

And that's about all the time I've got for that! Sissy has respite for the next three weekends. SQUEE!!!

[1]Do not Go Gentle into That good Night Welsh poet, Dylan Thomas, beseeching his ailing father to prevail over his illness. Wiki story about the poem. Hey. I used to teach. Once an educator, ALWAYS an educator. It behooves me to throw in some learning on my blog occassionally!

Wednesday, December 1, 2010

WINNER
Well, with only two entries in the OUT CRAZY THE CRAZY contest, I didn't take the time to have voting and I just voted myself. FosterAbba's tale of fostereema quacking at their daughter was great but it can't beat Marythemom's tale of dressing like a fool for the sake of embarrassing her forgetful children.

Mary, email me directly with your snailmail and the coasters are on the way!

The Next Contest: MY RAD DOES CRAZY THINGS
Many of you reported that you haven't done crazy things to make a point for your RADs. Which I'm certain isn't true, you are probably doing all kinds of wild and wonderful things to teach your children. But this time, I want to know what wild and wonderful things your RADS have done to make you go crazy.

Rules:
1. deadline for entries is midnight 12-6-10, EST
2. your child's tale can not include anything that required interventions from police, emergency rooms or hospitalizations - in the interest of respecting our children (though they are loathe to respect us) let's keep is "clean"
3. comments are open to anonymous
4. in Comments tell us YOUR craziest my-RAD-does-crazy-things story
5. if you choose to tell your story on your blog, please link this post on your blog using this url: http://peaceinpuzzles.blogspot.com/2010/12/winner-next-contest-and-resignation.html
Then put your story link in Comments here
6. Stories will be linked or reposted on this blog for the purpose of voting
7. voting is open to all readers, voting ends midnight 12-8-10, EST.
8. Winner will receive a quilted set of four Christmas coasters!

I will make the coasters tonight and post the pictures so you can see what you might win. They will be the same as before only a different color scheme.

PLEASE link on your blog so other bloggers have the chance of winning too!

Resignation
Sissy had a great week last week. "Great" defined as rages that didn't last more than 25 minutes, opportunities where she might rage but she chose to grump, stomp and whine instead, minimal lying, sneaking and manipulation and overall, significantly easier to live with. The reason? The kids were off school for the entire Thanksgiving week. And... she had a panic attack five minutes before we got into the van Monday morning for school.

Even though she had a less stressful week, even though we have accepted that our state is broke and Sissy will not qualify for a placement, even though I'm still willing to go to the ends of the earth to make sure her needs are met (including traveling to Boston - still waiting to hear back from them), even though I would love for her to be a functional and integral part of our family ...

I have resigned to accept that it will never be a reality. For whatever reason, RAD, organic mental health issues, developmental delays, self-will, irreversible trauma, abuse, Sissy is incapable of comprehending relationship, love, trust, or family. Though we dance around her and beseech her to play along, though we talk to her in soothing tones, though we spend HOURS each week getting her various therapies, though we give her EVERYTHING she needs and often what she wants regardless of her behaviors, she remains an emotionally desolate island.

I look outside my maternal view of my daughter and I am disheartened to see such a challenged child that is incapable (or is unwilling?) of receiving anything from anyone with any modicum of normalcy. Then I say to myself, "this is MY daughter. This person I am responsible for. This person who will continue to bring me sorrow and pain both wittingly and unwittingly is mine to raise to adulthood. This young woman who barely regards me but who lives in my house, eats the food I prepare, wears the clothing I purchase for her and asks me to brush the tangles out of her hair is my charge, like it or not."

When I dropped her off for therapeutic respite she spoke with her back to me, "bye mom". And I left without another thought from her. When I picked her up, I got a half-hearted, "hi mom" as she sullenly walked past me at the front door and got into the van. Last night she begged for a hug goodnight after raging for over an hour but then confessed directly afterward that she doesn't really care about me, that hugging is habit and she can't sleep unless she's done it.

This morning I told her the therapist was picking her up from school and she giddily hopped up and down, clapped her hands and shouted, "YAY! I love outings with her!!!"

Resignation becomes me, don't you think? Resigned to be Sissy's mother whether she likes it or not. Resigned to not let her crap yank me around. Resigned to out crazy her crazy by waving my granny-pantied bottom at her. Resigned to the fact that I'll continue to search high and low to get her the support she needs while she verbally berates me and emotionally regards me as a statue. Resigned to the truth that she'll be an adult one day that will bad mouth me to the world while bouncing from one person to the next until she wears out her welcome and their pocket books. Resigned.

Tuesday, November 30, 2010

Our first (and only entry) is compliments of Marythemom which, I must add, is pretty gosh darn crazy.

Maybe you feel like you've never done crazy stuff to keep from going nutty raising your RADs. But you know another blogger that has. One word: LINKEROO!! send 'em on over here so they can enter.

And this just in, my I-think-best-when-I'm-in-the-shower brainstorm, for those of you who don't think you're crazy, next week's contest to win another set of Christmas coasters: MY RAD HAS LOST HIS BRAIN contest!. Tell us about the crazy things your RADlet has done.

Monday, November 29, 2010

I haven't had anyone post their crazy stories yet. So here's some proof that I'm crazier than you. Here are some crazy pieced quilt squares. Proof that my cheap 15 year old machine from JCPenney can quilt insane nine-patch nine patches without foundation piecing!

Sunday, November 28, 2010

I finished it on Thanksgiving day and now, three days after Thanksgiving, it is hanging up. Sadly, the picture doesn't show the quilting but I'm looking at it while I type this and I can tell you, it looks pretty.(sawtooth star)

the matching table runner and trivets

Thirty minutes ago I sat down, after feeding everyone and just as I took my first bite of turkey sandwich, Sissy says, "Mom. What does caffeine look like alone?"

I don't know how she does it, or why. I can't even tell you if it's intentional or just extremely poor timing. I certainly can't certify the crazy crap that comes out of her mouth. I can tell you only this. When the crazy comes out of her mouth, I ignore her. Who can answer these insane questions? "Not I," says the the cow. "Not I," says the dog. "Not I," says the cat. "Nor I!" shouts this mother!

Last night I took the opportunity, after a very LONG drive home, Sissy and AB going nutso giddy, to send some crazy back her way. While playing outside at Grandma's yesterday afternoon, she decided to pick a rose off the rosebush, apparently it was a gift for me. Then, as we packed to go, she decided to put the bloom in her hair. Sometime on the trip home with all of the insanity happening in the backseat, Sissy decided every petal of that rose needed to come off and be dropped on the floor and seat, left for the clean-up fairy to come and clean it up.

I discovered this petal palooza when I returned to the van an hour after our return home, to unpack. I opened up the side door and voila. Petals. Everywhere. I breathed a sigh and gathered my wits. *think, think, think* Ok, I'll just have her suck it up with the handvac. whatevs. i won't dissect the RADical connotations. I just want the flower cleaned up.

I went to her room, she was already in pajamas. I handed her the handvac and said, "Do you know what I want you to do with this? Here's your hint. I've just returned from the van and noticed a mess."

"There's petals everywhere?"

"Yep."

"oh."

"It's cold outside, i suggest you put on your robe before you go out. Thank you for cleaning it up without raging." (I threw in that last bit as a Don't-TRY-raging-about-this)

"you're welcome."

o.O

Two minutes later she emerged from her room with her robe on. That is to say, from the front, it was closed and sashed. From the back, it is hiked up all kinds of crazy, her bottom hanging out, the sash haphazardly tied about her rear. We've had discussions about her unwillingness to put on her clothing correctly. The robe being the most ridiculous offender to her come-what-may attitude about attire.

"Um. Sissy. Your robe is ..."

"...WHAT!?"

"*ahem* Well, if you want everyone to see you that way, leave it. OR, untie your robe and fix it before going out."

the rumblings of a rage were in the back of her throat. Somehow we managed to get through all of the put-down-the-handvac-untie-the-sash-pull-down-the-robe-over-your-butt-retie-the-sash instructions without an all out war and she was out the door harrumphing at the injustice of having a mother that gives a flying flip. And that's when I got crazy.

I dashed into the bathroom, stripped, threw on my pajamas and put on my robe. Only I made sure my robe looked perfect from the front and absolutely idiotic from the back. My granny panties hanging out, my robe hiked up above my waist, my sash looped UNDER my derriere. I made it to the kitchen just as Sissy was putting back the handvac.

"Thank you for putting that away correctly." I said with a silly grin. Sissy looked up and saw only my perfectly tidy front. "Just one question." I snickered and turned around, bending over for full affect. "Is there something wrong with my robe? I'm getting a draft on my bottom." I patted it for full affect.

Sissy grunted at me, groaned and then growled. "UGH! MOM!!!!"

"What?" I turned back around, looking at my front. "I just don't understand it." I feigned ignorance in my best Snow White voice. "The front of my robe looks just fine." I cinched the sash tighter to prove the point.

"yourrobeiswrongintheback" she mumbled to the ground.

"Oh? What should I do?"

"PULLITDOWN!!!YOURBUTTISSHOWING!!!!!" she hissed at me.

I turned around and did as instructed so she could witness what I was doing to make my robe correct. "Oh yes, you're absolutely right. That's much better. My bottom is nice and toasty warm now. Thank you!"

more grumbling. "Well Sissy," I turned around and faced her, coming within her invisible comfort zone as I knelt just low enough to be eye-to-eye. "That looked really dumb, didn't it?"

"yes."

"I bet you would have laughed at me if you weren't mad."

grunting.

"You should have. I looked stupid. I looked like an absolute idiot."

glaring.

"When I ask you to fix your robe, it's because I don't want people laughing at you. I don't want YOU to look like an idiot."

"but, but, BUT!!!..."

"you've told me it makes you really mad when people laugh at you. Right?"

"yes."

"So as your mom, I'm trying to help you so people don't have a reason to laugh at you. i do this because I care about you. I care what you want."

grunting.

"Do you know how to put your robe on correctly?"

"yes."

"So ... if you choose not to, then you're going to look like an idiot, aren't you?"

2. if you choose to tell your story on your blog, please link this post on your blog using this url: http://peaceinpuzzles.blogspot.com/2010/11/out-crazy-crazy-contest.html
Then put your story link in Comments here

3. Stories will be received until midnight Monday, EST.

4. Stories will be linked or reposted on this blog for the purpose of voting

5. voting is open to all readers, voting ends midnight Wednesday, EST.

Follow by Email

About me

About Me

Mom to an adopted sibling group. The oldest, Sissy, suffers from severe mental health issues and autism spectral disorder compounded by reactive attachment disorder as a result of her first year with her biological mother, abused, neglected and deprived. AB or affectionately, Autism Boy, also suffers from mental health illness in addition to a genetic disorder called F-G syndrome. WG or Wonder Girl, battles anxiety and anger as a result of living with two older disabled siblings and all of the nuances of this unique family dynamic.

We live in a subdivision in a bustling community fifteen miles outside of a major metropolitan area in Georgia. As the caregiver, bread winner, and custodial parent, my challenge is to keep the peace in the puzzles my children tend to be.

Jennie 42

Sissy 17

AB 16

WG 12

Carbon the dog 3

Acronym Dictionary

There are many acronyms and terms to learn when raising challenged kids. Need help? Click here